Reacting to Angelina Jolie’s Breast Cancer News

Here’s something I never imagined: that my name would be associated with Angelina Jolie’s. But because of a recent cover article I wrote for the magazine, “Our Feel-Good War Against Breast Cancer,” I’ve been deluged by questions about her decision, which she revealed in an op-ed yesterday, to have a preventive double mastectomy.

My heart goes out to Jolie, who learned that she carries a BRCA1 genetic mutation that drastically raises her risk of breast and ovarian cancers. That’s the Cliffs Notes version — if you’re among those with a suspected mutation, you should dive into the research, understand the impact of the range of interventions (removing ovaries, removing breasts, surveillance). There are no “good” choices in such cases: only bad and worse ones. Making them in Jolie’s situation, when your own mom has died of cancer, is even harder.

The discovery of BRCA mutations was big news when I learned I had breast cancer in 1997. Because I was so young at the time, because one of my aunts died of ovarian cancer at age 54 and because there is a somewhat higher incidence of mutations among Ashkenazi Jews, I decided to go through genetic counseling myself at the University of California, San Francisco. Computer models put me at a 90 percent probability of having the same mutation as Jolie. Nonetheless, I put off testing for 10 years. Part of that was because I knew I was at high risk for breast cancer — given that I’d already had it — and I wasn’t sure how the results would change anything. After I gave birth to my daughter, though, I decided it was time. If I had a mutation, I planned, at the very least, to remove my ovaries.

To everyone’s surprise, I ended up testing negative. But that doesn’t mean I don’t have a genetic mutation — I probably do. I just don’t have one that is known. Because of that, my doctors can’t truly calculate my future risk of a new cancer. Is it high? Is it low? Is the cancer I’m at risk for deadly or treatable? And there are no specific recommendations on how I should proceed. Grappling with that ambiguity was difficult. I got there, though, and made my peace. Most of the time, I try to live fully with whatever time and body I have.
Given her test results, Jolie’s decision is completely medically defensible. It’s based on assessments, testing and her own personal tolerance for risk (someone else may have made a different choice, and that would also be defensible). She also happens to be an international celebrity and major sex symbol who needed to get out in front of the story and talk about her bilateral mastectomy before it became gossip. She was right not to be perceived as hiding it.

My concern going forward is that people remember that Jolie is not a woman of average risk. She is not even a woman of somewhat elevated risk. She is, sadly, a woman at very high risk of cancer, one with a genetic predisposition and a family history of deadly disease. Only .1 percent to .6 percent of the general population have the mutation Jolie carries (though everyone probably has mutations that predispose them to something). The rate among Ashkenazi Jews is about 1 percent. That means that having a mom who had breast cancer, for instance, especially if she was older when given her diagnosis, especially if her tumor was low-grade, is not an indication of a mutation in your family nor necessarily a reason to test — or to panic.

We have to be careful not to conflate Jolie’s situation and choices with those of an average woman or even with those of a woman who receives a diagnosis of low-grade breast cancer or ductal carcinoma in situ (D.C.I.S.) — a kind of “precancer” in which abnormal cells are found in the milk-producing ducts. Preventive double mastectomies among women in that latter group have shot up by 188 percent since the late-1990s. The steepness of the rise suggests those operations were driven less by medical advice than by women’s exaggerated sense of risk of getting a new cancer in the other breast. According to one study, such women believed that risk to be more than 30 percent over 10 years when it was actually closer to 5 percent.

I am concerned that the coverage of Jolie’s decision, if not handled carefully, will add fuel to a culture of fear, to a misunderstanding of risk that could compromise women’s health choices. Having a mastectomy, I am here to tell you, is not like getting a haircut. It’s a huge ordeal. And reconstruction, while it can look great, will never have sensation. Not ever again.

So before removing her breasts, a woman should (as I’m sure Jolie did) have reputable counseling by a specialist. She should understand her personal risk of future disease. She should know that many breast cancers are survivable, that the disease is not necessarily a death sentence. She should take her time, if she has such a luxury. Knowledge is power: before you remove a breast, be sure you are fully informed.

Bruce Grierson wrote this week’s cover story about Ellen Langer, a Harvard psychologist who has conducted experiments that involve manipulating environments to turn back subjects’ perceptions of their own age.Read more…